stiffness in my hands began around March this year (2024) in August diagnosed with RA. X-rays showed some erosion in my hands …
Started Hydroxychloroquine 200, 2 weeks ago, informed it could take 3-6 months to kick in. Also been informed these meds may not be strong enough , appointment November with rheumatology.
Mornings are horrible ! Feeling a bit overwhelmed ..my mum had very severe RA so it was a trigger for me, she died young, treatment wasn’t available then, only painkillers.
NHS so busy things feel worse as system is slow…
Although we are all individual in how we react to treatment and situations, it helps to be around those who somewhat understand.
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Adorable1
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Sorry to hear you’ve been diagnosed with RA and hope your up-coming appointment with the rheumatologist will be reassuring and productive. By then you’ll have worked out some questions to ask ‘cos when you’re first given the bad news your brain can’t take it all in!
Luckily, these days treatment for RA has come on in leaps and bounds and the drugs prescribed are considerably better targeted than previously so it’s a case of tweaking the dosage rather than switching constantly ( though that can happen depending on your particular circumstances). Very sorry to hear about your mum but be assured you will have a much better outcome.
This is a great forum for advice, understanding and empathy. Everyone on here is either a long-term, old timer (like me) or new to the forum but all are willing to help anyone who needs it. The team at NRAS are brilliant for advice and info - always worth talking to them.
Best person to ask for medical advice is your own doctor. We can’t give any on here and you are unique with your own disease process so they're your first port of call but we’re here for all the other bits so ask away!
I'm sorry you're now in the club that no one wants to be in. I read that those who are diagnosed now have better outcomes due there being more treatment options available compared to when your mum was poorly. I do think a call to NRAS would be good for you at this moment. I called them last year when I was overwhelmed and it really did help me. The other thing that has kept me going is the words of encouragement on this forum. Sending you a virtual hug. Xx
I was diagnosed 20 years ago, and even then there weren’t a huge variety of drugs available. We’re all different and it can be a while to get the right cocktail of drugs. Good luck.
Welcome to the club nobody really wants to be in! Hopefully being here will help you navigate your way through. Lots of support and understanding from those who really understand what you're going through. 😘
Sorry to hear about your Mum but you're right that things were much harder then without the wonderful medications available to us now.
The initial few months are the worst so try to stay positive as things WILL get better 😉 I realise that it's all a bit overwhelming at the beginning but it sounds like you're off to a good start. Hopefully your rheumatology team will have a plan ready for you at your next appointment but if things haven't improved by then, I'd suggest making sure that they know that - no point in being "brave" as they can only help you if they know your situation. Everyone is different and we're not medical experts but I was very happy when my consultant decided to treat my RA aggressively from the beginning. It took some time (with a few blips on the way) but currently I'm doing well and feeling an awful lot better than when I started on this journey 😅
It might be worth keeping a diary of your symptoms to take to your next appointment, along with photos of any swelling/redness. Hopefully you've got/will get the number for the nurse helpline as that can be invaluable between appointments.
Thank you everyone …although I wouldn’t wish it on anyone, it really is helpful to hear from those who are familiar with their experiences and tips along the way.(not the monetary kind 😆) I’m grateful for all the replies, I’m sure this forum will help me at times…❤️
Do have a look ( if you haven’t already) at the NRAS website, they do lots of helpful publications you can download or order and a helpline if you need to talk through things with someone. Welcome to the group 🤗
Honestly the meds are so much better now as someone of 65 and still working having seen rheumatoid patients years ago please believe it's so much better life can become more normal for you
Welcome, pull up a chair and join the chat. Oh, you have already!
That was a good move. Do look at the NRAS website and join a local group if there is one. Failing that, look for Zoom chats, Facebook Live events and watch You Tube recordings of NRAS events. You will find a good community learning and sharing together. Ampersand Joint Conversations are also a very good way to meet and talk. All of these are free too.
On a personal note, I had a lot of hand problems at the start until I was on the right meds but I found soaking my hands in hot water for 15 mins, as soon as I got up, was a great way to loosen up and very soothing. I hope that helps you too.
Hey Adorable1. Everyone’s sorry you’ve ‘joined our club’. I was diagnosed when i was 21. (53 now!!) I know it’s a massive shock to the system. When my life was just starting. I felt i was about 90. That my life was over. But i was diagnosed in the 90’s! Treatment has improved massively. I have a 6 weekly infusion. I’ve had it for the last 20yrs. Before then, i was on strong, strong painkillers, steroids & other very powerful meds that can be bad for the whole body.
All i can say is. There are some lovely, kind, understanding medical staff out there. The NHS is fantastic. A personal tip is. Look after yourself, be gentle on yourself. Don’t rush things. The mornings can be extra painful. So spoil yourself. Give yourself extra time to get up. Have a lovely hot cuppa in bed (with a couple of biccies!) If u have a tablet. Put it on in bed. I always put a comedy on when i’m feeling low. Or i just love a big, hot bowl of soup. Nothing like it. Especially on a cold day. (Minestrone & chicken soup are my faves). In the meantime. You can always come on here. We all understand what you’re going through. Physically & emotionally. You can write on here anytime. Day or night. Good luck x
Hi & welcome. Sorry to hear you’ve been diagnosed with RA it’s a shock at first & I remember my head was all over the place. It sounds like you have been diagnosed quite quickly which is good. I’m sorry about your mum too & as others have already said the meds for RA have come on tremendously in the past 25 years. Morning stiffness is still there for me after 25 years but only last 10-15 mins. Finding the right combination of meds to keep your symptoms under control can take time though. Let them know if the pain gets too bad as they can’t help if you don’t tell them. Make a list of questions to ask at your appointment by which time the Hydroxychloroquine should have started to work. It quite normal for them to add another medication to it if required. As others have said take a look at NRAS website for info on all aspects of RA. They also have a telephone advice line & are really helpful.
Hi, so sorry it's hard at first I remember it well. I too was diagnosed a few years ago with RA and a few months later my husband with Psoriatic Arthritis, so as you can imagine it caused quite a few bumps in the road for a while. It will get better and you will move forward with this condition, it takes a while, but it becomes less overwhelming and scary in time. I too went on hydroxychloroquine and when this proved not sufficient then a small dosage of methotrexate was also prescribed. Its a quite drawn out process. The hydroxychloroquine does not affect your immunity levels so the rhemy will want to see if this works first. He then kept me on both meds as dual therapy often proves more effective than monotherapy, and hitting the condition hard in the early stages is therefore often the course of action.
My hands and feet were affected. I'd suggest going on line and looking for Isotoper compression gloves. Even though I'm on prescription meds I still sleep in these every night. They reset my hands and by enlarge I now just get on with the day. They are superior to other compression gloves as the seams are on the outside of the glove. These were prescribed to me by the hand therapy lady at our hospital but you can buy them online too. Also I bought a hand massage machine this proves great when a top up is needed and really helps too. I was sceptical about the gloves and devices like these but they do really work.
What also helped me (and I always take my prescribed meds regardless) was adding in a supplement called hyaluronic, the same stuff found in a lot of face creams nowadays. I buy the high strength stuff from Weightworld. These on average take about 12 weeks to kick in but I felt the difference at 11 weeks. RA affects the synovial membrane of the joints and diminishes the fluid levels. Hyaluronic supplementation helps by putting the lubrication back in. These made a real difference to me when I felt the prescribed drugs weren't getting me to where I wanted to be, which of course was ideally or near to as possible, feeling like my old self.
I really do hope these extra little hacks, along with all the good advice already provided, really do help you too. Stick in there, life will feel normal again. x
Hello and welcome. We've all been where you are and we're mostly doing ok. Loads of knowledge, experience and empathy are so useful when you're at a bit of a loss. Enquire within for everything
oh I’m so sorry, it’s a very daunting feeling, you don’t know what’s what and what the future holds. I’m sorry to hear about your mum, that’s hard and may well have spooked you now with your diagnosis. It’s all normal 🥰. Take each day as it comes. I was on hydroxy for 6 years , now I’m having to move to stronger different meds. Meds have advanced so much and hopefully your rheumy nurses will be there to guide you. Reach out to friends and try the art of distraction. I’m terrible at the “ what if’s” and my mind races ahead and I totally overthink so I’m having to learn to think differently. That said when I first start my new meds I’ll probably forget my own advice 😂. Keep strong, when you get your meds sorted you may well feel like your old self. And one final thing, if you haven’t already, try swimming or Pilates. Meeting folk opens up brighter days too. Good luck and take care xxx
Hello Adorable. I love your username. It's positive and mad me smile.In addition to all the great, empathetic and helpful replies you already have, I watched NRAS live this week on Facebook and they introduced the fantastic WREN Project. A charity for autoimmune patients. wrenproject.org/.
If you just want to talk to someone. Maybe have look at their website, nothing to lose.
I hope your medication kicks in soon and you'll have a good meeting with your consultant in November.
honestly I’m truly overwhelmed with all of you. What a lovely welcome along with hacks and tips , truly invaluable ! My apologies for not replying to you all individually I’m struggling to type too much. I did plan to reply to all.
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